Questions About UTIs...

[Birdie]

So Birdie, what was causing your bladder/UTI issues? I'm having the same issue, my urine tests will show bacteria (moderate), mucous, leukocyte esterase in my urine, 2+ WBC esterase, 11-30/hpf WBC (normal is 0-5), epithelial cells (non-renal) greater than 10 (normal is less than 10), hyaline casts. It wasn't showing nitrates, blood, ketones, glucose or protein. I keep getting low-grade fevers every day, I have an upper respiratory infection, I have several times a day that I get severe abdominal cramps, but it does not burn when I pee and I don't know if it smells because my nose is totally blocked.

Since a repeat urine test I did this week with a culture didn't grow any bacteria, my rheumy's nurse said there was nothing I can do. I just know something isn't right, but I have no idea what to do now.

Wow, that's not so much like my problem. I never got a conclusive diagnosis. It was a solid month of pain beyond extreme. The neighbors could hear me screaming on the toilet through heavy block walls of our houses with 20' in between. Every fifteen minutes, 24 hours a day on the days I wasn't in the hospital.

I was passing as many 15 blood clots every 15 minutes, in less than one ounce of urine. Like sharp razor blades passing through an incredibly sensitive place at a slow pace, then getting stuck due to no liquid to flush them out. All of this while enduring many other less painful issues like severe DVT's keeping me from moving most of my body and wearing compression garments to keep swelling from tearing off my skin.

I did not show infection of any kind in urine samples so they demanded it wasn't an infection. No sign of cancer, no sign of anything except constantly passing massive blood clots in very small amounts of almost black (when it wasn't blood red) pee. Over a months time it kept getting worse, MUCH worse. The hospital was incredibly bad, no communication, no explanation of what was going on or what they were trying to do for me.

My live in nurse dragged me to another hospital where the ER doctor decided to treat it as an infection, prescribed medication for infection and pain, then sent me home. A few days later I was back in the first hospital where they kept a catheter flushing for about a week. Nurses constantly emptied large bags of black liquid, about a gallon every two hours. A camera put where you don't want a camera, showed what the urologists claimed was hamburger inside my bladder.

Sometimes someone would say it's an infection but we can't prove that, sometimes they would say... uh, I dunno... then I get "you have Wegeners" as if that explained it... then talk about the phase of the moon... but no real diagnosis.

The only thing I believe helped to stop the progression was prescription/treatment for bladder infection. Until then it was getting worse by the hour for weeks on end. Constant flushing for an extended time certainly helped clean out the blood clots and MAY have been what solved the issue. The reason I think the medication helped is that my fever went from 102 to 105 degrees down to mostly normal, right after starting the meds. It didn't help, not immediately at least, with any other symptoms but the problem stopped getting worse.

Sorry I can't be any more help. My problem was minor for a while before the whining story above, yet it went that sour in a couple days.

I guess from my experience, if you have Wegeners and all else fails then: GO FOR THE ANTIBIOTICS!!!

[Birdie]

You may want to consider a cystoscopy to see what the inside of your bladder looks like. If you were ever on cyclophosphamide/cytoxan, you may have an inflammation there.

Cytoxin damage and cancer were both discussed as possibilities in my case.

Get a camera put where you don't want a camera.

Get a tissue biopsy of anything in there that is not normal.

One last suggestion, listen to Pete, I think he's a little smarter than he looks.

[txrepub4God]

Thanks for letting me know your situation with this, Birdie. My problem is, my last several urine tests have all showed bacteria and mucous, which you would think the 80 mg I take of Bactrim EVERY DAY would be taking care of. I will occasionally feel a tiny burn after peeing, but not like I have in the past with other severe UTIs. I don't have the critical urge to pee and then nothing comes out - I just hardly ever have the urge to pee. I know my kidney disease doesn't help that all, either. The only time I actually have the urge to go, is pretty much all night long when I don't want to. LOL The thing that I don't understand why I'm getting it is the severe abdominal cramps out of nowhere 2-3 times a day. Like, curl up in a ball and groan cramps. I also look bloated in the stomach somewhat.....however, my liver tests are fine. Kidneys are a little more messed up than normal, serum creatinine 1.74 and eGFR 36. Plus, I'm fighting off yet another head cold, which happens every month now. Blowing out the grey rubbery fungal blobs again, sore throat, swollen neck lymph nodes, low-grade fevers, extreme exhaustion, night sweats - just your normal "I feel like total crap" Weggies feeling.

One new symptom I'm having that I've never had before is having a bit of a hard time swallowing. I've got a ton of sinus drainage and am having to swallow a lot, but it's like I'm telling my throat, "Ok, time to swallow saliva!" and my throat is saying, "Huh? Swallow? What in the world is that?" I finally am able to get the saliva swallowed, but it's taking a good deal of time convincing my throat muscles to cooperate. It's very strange as I've never experienced this.

I am going to see my primary care doctor next week, as he is very attentive and I believe will definitely listen to my concerns and figure out if something major is going on besides the Wegs. I like my rheumy, but she's over an hour away and I just haven't felt the concern from her over these latest urine tests. I know my body well enough to know when something just isn't right, and my primary care doctor will usually investigate something every which way he can until he figures it out.

[drz]

Having the inside of your bladder look like raw hamburger is not uncommon after being on CTX for awhile. I was lucky so far to avoid this complication but I did have many bladder infections. One thing that struck me as strange about them was that the proper treatment often changed. One time I get results that it was resistant to a certain antibiotic and the next infection would show that was the best med to treat the infection.

Bacteria are the consummate organism to prove the existence of evolution. They can quickly and very quickly evolve in a manner of hours to a new form that becomes resistant to whatever antibiotic that is killing them off so this can make it very hard to treat such infections.

My guess is the raw flesh from the inflammation is what caused the bleeding and black urine mentioned in a above post along with extreme pain. Hopefully some other meds helped it heal up. Bladder pain is serious issue so find a good urologist that knows about treating Wegs too.

[Birdie]

severe abdominal cramps out of nowhere 2-3 times a day. Like, curl up in a ball and groan cramps. I also look bloated in the stomach

hard time swallowing

OK, here's what sucks. Some of what you added sounds more like my first year of WG, long before the bladder issue we've been talking about. It was a massive number of fungal infections, everything but my toenails and nose hair was affected by many different types of fungi. Cured quickly by a week in the hospital with several different antibiotic IV's running all the time. Seriously not good but prednimask was in effect, pumping me up to function when I should have been crashed hard.

The bloating and cramps was all colon induced across the belly just below ribs. Do you have/know about/been diagnosed with diverticulitis? Is the pain more on the left and down low? That's the most common area for diverticulitis. If you don't know what it is or have only a passing knowledge of it then a bit of google work will make it very clear. It's easily understood with a couple diagrams and a paragraph of text. I complained about that pain for a year any time a doctor started probing my abdomin. Got no attention to it until it was ready to burst and started with blood out the other end too.

Another possibility I've been blessed with is c-DIFF infection. You say your smeller aint working too good so look for color in your #2. If it's sort of orange, almost flourescent, that's c-DIFF. It has a very distintive odor. The c-DIFF discharge can be intermittent. If it's a mild infection then a colony breaks off in your colon and is swept out, so you have to check constantly ---- every time before you flush if you want to catch a glimpse of it. It might be in the water or it might be on the poo. If that's it and it's been going on for a while without MASSIVE problems, then your gut flora/fauna is accepting it, it has become a part of your digestive system function. You don't want it there in any real quantity although a fair percentage of people naturally have c-DIFF. It works for them. New strains produce hundreds of times more toxins than a decade ago. The antibiotic to kill it is very expensive with serious side effect risk. Let me know if it turns out you've got c-DIFF. I'm the all time expert on having it.

The swallowing issue is also familiar. They put me in front of a real time x-ray machine. Watched as I ate and drink an assortment of stuff. It's the only time I was ever told I'm normal. Doctor said that and the nurse laughed, she informed him I'm not anywhere near normal. You might not guess it but I'm a handfull in the hospital. Not in a bad way. The step after the x-ray machine was a camera down my throat. It showed nothing as well. It was as you say... Huh? Swallow? Feel like you have to push food down with a finger. The problem stopped when the fungal infections were cleared up. In fact, everything stopped once the infections were gone. Everything but side effect of medication. I think prednisone is still causing most of the world's earthquakes and hurricanes.